After yesterday’s post, I am reminded again tonight that there is power in telling our stories.
A few years ago, having a rare tumor like a paraganglioma meant that you would probably never meet someone dealing with the same type of disease. Unless you were lucky enough to make it to a specialist where you might run into other patients, you might never know that there was anyone out there in a similar boat.
Right away it was evident to me that the ‘rare’ factor was going to be isolating and terrifying. The rare factor means often knowing more than your doctor about a serious disease threatening your body. It means that there are not support groups for you. It means that you have no one to compare notes with. It’s a very vulnerable feeling.
Except now, there’s Facebook. I’ve been really lucky to find three different groups or pages on Facebook dealing with Pheochromocytomas and Paragangliomas.
I found them and in desperation asked questions. Tons of questions. People who had walked their own paths gave answers and shared their experiences. They showed up and said, “This is how it worked for me. Have you considered trying this?” And some of these people were the ones who told me to consider going to the NIH.
And now that I’ve had my surgery, I’m no longer standing there wide-eyed like a deer in head lights, so I get the chance to be the one to say, “You can do this. This is scary, but there’s options.” When people come to the group and say that they’re getting nowhere with their doctor or they don’t have insurance and can’t afford the tests that are needed let alone the treatment, I get to pay it forward and mention the options that helped me so much.
There is something magical when people connect and swap notes and you get to play a small part in someone else’s story.
Today a newer lady made her way to the boards. I didn’t see her story at first and didn’t notice that her tumor was in the same location as mine until a couple of friends of mine said, “Hey Val–I think it would really help her if you shared your story.” My initial response was “My story is pretty boring.” Because…. the tough part of these groups is you end up hearing a lot of the ‘worst-case scenarios’ too. And the thing about worst-case scenarios is that while they are usually not the norm, they garner a lot of attention. With the screwy nature of the human condition involved some how or another the toughest cases are in some backwards way almost ‘flashy’ (though I know that those living would be happy to NOT have such an attention-grabbing story!).
Luckily, both of the friends who nudged me to share with this new group-member immediately said, “She NEEDS boring right now. Share your story.”
That was kind of an epiphany for me. It should have been a ‘duh’ moment, the obvious hadn’t quite sunken in for me yet.
The funny thing is that I’ve felt funny participating in the groups sometimes. I’ve felt my own strange brand of ‘survivor guilt’ at times, which I’ve written about ad nauseam at other times. I felt like because so far my story has been relatively low-key I wasn’t as much of a survivor as others, or that maybe I was just trying to be over-dramatic by participating in these groups. I’ve almost been embarrassed by having a story which has been, up to this point at least, relatively easy in comparison to many in these groups.
But tonight. BORING was what was needed. It turns out (and how could I have forgotten this, wide-eyed as I once was?) that boring can be surprisingly reassuring.
I wonder how many times I’ve squashed my voice in other every day things because I thought my experience or perspective wasn’t anything special or that my ‘ordinariness’ precluded me from having anything worthwhile to say.
I wonder how many times I’ve shrunk back when all that was really needed was for me to show up. For me to be honest about me. Ordinary or boring or otherwise.
Rare tumors are one thing, but in most ways I’m just your run of the mill wife and mother. But God can use my story and my perspective in ways that I would never guess if I’ll just show up and share of myself.
He’s so cool like that.